On Feb. 1, 2014 Tanner Ashton Froy was born.  After having 1 miscarriage but a very easy and normal, full-term pregnancy, our baby boy was finally in our family.  From the second he came out, he cried…a lot.  But it wasn’t a colicky kind of cry and he did take brakes.  He ate a ton and was growing normally.  As a new mom, I kept making excuses saying he was just a baby and the crying was normal.  Brian, having been a dad before, kept saying “something is wrong with this kid”.
At 3 months old, tanner was not making eye contact or smiling often but the doctors kept saying not to worry because he just might be a little delayed but it’ll happen.  It’s common.  Mother’s day week/weekend, we took him to Destin.  I had seen what I thought were seizures a couple times but no one really believed me.  After Brian saw for himself what I was talking about, we came back, went to the doctor first thing Monday morning and were then told to go straight to the hospital.  We spent a week in the hospital where he had multiple confirmed seizures and was diagnosed with epilepsy.  We have seen Tanner seize thousands of times at this point, but during that week, watching our 3 month old newborn baby seize was not something than can be compared to anything.  It was the worst time in our lives…so far.  Tanner was put on an anti-seizure medicine and for the next 3 months, he went seizure free!
All we heard during these 3 months is how he would grow out of this.  He’d be fine.  Epilepsy was so common! So For the first time, hope set in and we chose to believe everyone else.  Even though Tanner was still not meeting ANY milestones.  The day of the magnolia walk in august of 2014, at 6 months old, Tanner had his first seizure, again.  That was almost exactly 3 years ago and Tanner has been seizing every single day since. 
October 31st of 2014 was Tanner’s first Halloween!  He was still in daycare at this point and I was so excited to go to school with his costume so he could be strolled around in their parade.  What a fun day with friends! When we brought him home, we did another parade in our neighborhood and because it was so cold that year we quickly brought him back home as Brian and I took turns feeding him and getting him to fall asleep while socializing in our cul-de-sac with neighbors and kids.  We had tents, drinks, chili, candy and tons of people.  I ran in to check on Tanner who was with Brian and he felt very hot to me.  Remember, just a few hours earlier, he was perfectly fine!  I knew that fevers could bring on seizures so I didn’t hesitate.  I went to get Tylenol to give him but before I could measure it out, he started to have his first tonic clonic or grand mal seizure.  Now he can’t swallow anything.  I had NO rescue medicine at home because the doctor refused to give it to me since Tanner was so young. I don’t remember how long I waited in hopes that it would end, but it never did, so I called 911.  I notified people outside that an ambulance was coming and then I wish I could say that everything got blurry and I don’t remember, but I remember every detail.  Tanner seized for 45 minutes straight.  Picture an almost 9 month old baby, shaking uncontrollably.  Brian held him the whole time until it was time to put him in his car seat and be transported onto a stretcher and into the ambulance.  For the first time, the thought crossed our mind that our son may not make it.  This was the worst time of our lives…so far.  As our neighbors, who are almost all her tonight, prayed with us and for us, we went to the hospital.  Tanner had been seizing for so long that when we got there, they couldn’t find a single vein to get an IV in.  So they drilled, yes drilled a central line into his shin bone…as I watched.  Tanner had caught a virus, similar to ones you and I catch often, but for tanner, this was the result. 
6 days later, Tanner was diagnosed with CDKL5.  This was the new worst day of our lives.  Our son would never just grow out of his seizures.  We “choose” to remain hopeful and positive, but more thank likely, tanner will never walk, never even sit up unassisted, never have use of his hands, never be able to see clearly, never talk.  I’ll never hear what my son’s voice sounds like as he says mommy or daddy or I love you.  How annoyed do you get when your kid wants your attention and says mommy, mommy , mommy.  Now imagine you could never hear it again.
2 weeks later, we had our first fundraiser at a boutique in the city; we designed, made a sold special “Tanner bracelets” and raffled off a ton of fun stuff.  With lots of help, in a very short amount of time, we raised just over $12,000!  This was our therapy.  This was our way of not feeling helpless in a very helpless situation.  
In the past 3 years, Tanner has tried 14 different pharmaceutical anti-seizure medicines, a very strict diet of no sugar or carbs called the ketogenic diet, 7 different CBD oils, including straight THC, 2 steroids, a complete holistic supplement path, a VNS implanted into his chest and a feeding tube placed into his stomach.  Nothing has helped him.  We have witnessed at least 8 different types of seizures and currently he is having clusters of multiple seizures, all at once.  I now know that they are called hyper motor tonic spasm episodes and they are very common in our kids.   You would think that after witnessing your child seize every single day for the past 3 years, you’d get used to it and it would get easier.  But if you listened to this every day, could you ever get used to it?
https://youtu.be/TFHpbh1t4rA
When I was a little girl and then a teenager, I had visions of my wedding, like a lot of girls do I’m sure. As you get older, some of you may have visions of watching your little girls walk down the isle. You imagine your little boys in a cap and gown, graduating college one day.  When I was pregnant I dreamed of Tanner’s Bar Mitzvah day.  Shortly after Tanner was born though, all those dreams disappeared.  Now…now I wonder and actually dream of a potential funeral one day.  I know that sounds so harsh to hear and believe me, it was really hard to write.  2 CDKL5 boys have passed away just in the last 30 days.  Boys! There are less than 100 CDKL5 boys in the whole world yet 2 in the last month are gone.  As parents of a severely disabled child, Brian and I have had to sit down and discuss what would really be better.  Selfishly thinking, we of course want to go first just like all parents should.  Why would we want to bury my child?  And we don’t.  But what’s the alternative?  Who is actually capable of taking care of Tanner besides us?  If we went first, who would devote their lives to his therapy, his medicines, researching new surgeries and new trials and new medicines.  Who will put him to bed?  Who can carry him around the house?  Who will fight for him when his doctors say there’s nothing more we can do.  Who will wake up with him all night long and comfort him as he seizes?  And who really “should” have to take on that responsibility BUT his parents?  So the reality is all our thoughts and dreams and ideas of who Tanner would be need to be tucked away because that is just not his path.  That was OUR path.  Those were OUR dreams.  So for as long as Tanner is with us, we will try to give him the best quality of life we can.  We will buy him Ferrari’s so he can stroll around the neighborhood like the other typical kids.  We will take him to the pool and let him swim because he loves it so much.  We will fight to win grants to get him the equipment and toys that he could benefit from.  We will take him to the park and to his big brothers baseball and basketball games.  We will love him, unconditionally, with our whole hearts, forever. 
Hope is such a hard thing to have, yet it’s something that is almost too natural for parents to not have.   After 3 years of trying almost everything, how could we still have hope for Tanner to be seizure free?  We don’t.  But we’ve learned that hope isn’t always all or nothing.  We do have hope that although he may never be seizure free, we think better seizure control is possible.  We think a better quality of life is possible.  Tanner doesn’t appear to have an ounce of muscle on him so how could we still have hope that he could sit on his own or walk one day?   Because we are his parents.  But I am also realist.  And realistically thinking, without a cure, he probably won’t walk or talk, ever.  But thanks to YOUR donations, we get closer and closer to finding a cure and a better quality of life each day!  The foundation has been working with a few Pharmaceutical companies to evaluate some potential new therapies in CDKL5.  As you all know, one of the big problems of CDKL5 is seizures.  Just a few weeks ago, the first finding had been made to identify one of the potential causes of the seizures.  The foundation is already using this information to design a trial with a unique drug that could effect that pathway, and we hope bring us our first truly effective therapy to help decrease seizures.
After 1 small fundraiser and 3 Toasting Tanner’s, if we reach our goal this year, we will have raised almost $85,000!!!  From the bottom of our hearts, thank you all.  Thank you for being here.  Thank you for including us and tanner in your lives and the lives of your children. Thank you to Brian’s sister Tiffany for flying in from Chicago to be here tonight.   Thank you to our friends Miriam and Bryan, CDKL5 parents to sweet Landon, for coming every year and supporting us and to Landon’s aunt and uncle who are joining us tonight! Thank you to our parents who have never said no…to anything! They are such an amazing support team to us and we are so blessed to have all of you! Thank you to Carson for sitting around with us on weekends when we can’t do anything because tanner is having a hard day…and not complaining. He happily just “gets it”.  And thank you to Carson’s mom, Heather, who doesn’t see Brian as her ex or me as the stepmom.  All she sees is that Tanner is Carson’s brother and for that reason alone, she loves him and supports us.
Lastly, let’s all raise our glasses and Toast Tanner.  We are here to help all children living with CDKL5, but we do it in the name of our special, little boy.  Tanner, may your future here on earth be long and filled with happiness and may you get stronger and healthier with every single rise of the sun.

Each year, just after Tanner's birthday in February, I make a list of new tests I think we should consider getting since he's getting older.  And new therapies I think he'd benefit from.  This year, I decided on the following: look into hypotherapy (therapy on horses), aqua therapy (already begun),  repeat swallow study and an upper endoscopy.  The reason for these 2 tests is because around Jan or Feb of this year, Tanner started giving us a problem with eating and unfortunately, his seizures have not let up at all, which always makes everything worse.  Tanner has always been a great eater!  He gets 3 meals a day (puree's) and 2 formula bottles, plus water thru a bottle.  we are to the point now that some days he refuses to take a bottle at all, no matter what's in it.  Only on occasion will he take it.  This is a problem for a lot of reasons.  He needs to stay nourished properly, he needs to stay hydrated and it is my assumption that the seizures have caused him to begin to "forget" how to suck.   We give Tanner medicine for reflux but an upper endoscopy will tell us just how bad his reflux really is and if we are giving him the right amount of medication.  It will test for EOE, which is a chronic condition that affects the esophagus and can mimic GERD (gastroesophageal reflux disorder).  Basically, it could be causing him a lot of pain and is maybe the reason he's not eating so well.  It is actually very easily fixable.  He will need to be put under anesthesia for this test and currently is scheduled for June 14th, but that could get changed due to the main issue and reason behind this blog.

We had a follow up swallow study done and the results were not good. We knew he was aspirating with liquids and for almost a year now we've been having to thicken any liquid we give him.  Most of you reading this who know me, know I have always been hopeful when it comes to Tanner and generally speaking, I'm a positive thinking person about everything. Going into the test, I knew things had not improved and just wanted to confirm that, but in the back of my mind I thought maybe he HAD improved.  Why would I possibly think this???  Because I'm his mom and as realistic as I am trying to be, I can't get rid of hope, even though sometimes it may seem easier.  What did not cross my mind was that things were worse, yet they are.  Not only is Tanner still aspirating liquids, he is now aspirating puree's. Eating is one of the things Tanner always did well.  It brought him joy as he loved food, which in turn brought us joy.  But it is now harming him and I must take it away.  This was devastating and still very hard to comprehend.  When tanner started refusing bottles I started looking into feeding tubes and talking to doctors and some parents.  Our speech therapist found a special Sippy cup that poured the liquids out faster than squeezing from a bottle but slower than a regular cup.  we were able to give Tanner his bottles thru this, but this was only a temporary fix.  As a mother, I just want my child to be fed, to be happy, to be nourished and as healthy as he can be.  So we were "considering" a feeding tube if we had to, but we weren't there yet.  Then came the results of the swallow study. The nurse who conducted the study said Tanner's aspiration was "significant".  Every swallow is probably difficult for him and could be another reason he is refusing bottles. Tanner is losing weight and coughing with his medications, which are all liquids, MUST be given and has also gotten difficult to give.  For those of you who don't know, to aspirate means that liquid is getting into his lungs.  When he swallows, some is going down the right way into his stomach, but some is not.  If too much of it gets into his lungs, it could cause him to get very sick.
We've been thru a lot with Tanner, but so far, this is the hardest thing I've had to go thru and a terribly difficult decision.  Some of you may wonder what the decision even is.  This could be a matter of life and death, what decision is there?  and you're right. But again, as a mother, there's that little thing in the back of your mind or maybe it's in the back of your heart, called Hope.  Every day I think, "he took a bottle today, he's getting better", or "if we start this new medication and it works and his seizures get better, he'll start eating better and swallowing better". But the fact remains that my child is aspirating now and we need to help him.  We have been incredibly lucky that Tanner has not been sick AT ALL really, but I don't want to wait until he does and then kick myself saying, "why didn't I get the feeding tube earlier".

We are awaiting scheduling to call us about surgery, to place a G-tube into Tanner's stomach.  It will be in either June or July.  Could be as early as June 8th.  They will do the upper endoscopy at the same time.  We will be in the hospital for anywhere from 2-5 days.  We will still be able to practice feeding with Tanner by mouth, with just very little food and liquids. Only for the purpose of therapy, so he doesn't ever forget how (in case he gets better), and if he does, removing the tube is always an option or simply not using it.  But for now, it will give us peace of mind that he will get ALL of his meds and liquids and nutrients to help him grow and survive.  And our hope is that it will bring him no pain and even maybe relieve some pain he could be having now, that could even be leading to increased seizures. The other parents of CDKL5 kids I've spoken to say the tube was the best decision they ever made, but the hardest.  So far, all I know is this is definitely the hardest.  As I sit here writing this, I am thinking of yet another CKDL5 angel who gained their wings this week, but she fought this battle for 30 years!!!  I only hope and pray that all these decisions we are having to make will increase Tanner's chance of having a long, happy, enjoyable life with us. 

We hope to see you all at this years 3rd Annual Toasting Tanner, our fundraiser to increase awareness and research and funding for ALL kids living with CDKL5 and need our help, just like Tanner does.
https://toastingtanner.everydayhero.com/us/toasting-tanner-2017
FUCDKL5
Hope.Love.Cure

It's been a long time since I've posted an update on Tanner so here's what's happening in a nutshell:
We got on a trial thru Emory for a new medication to try and help control Tanner's seizures. For the first time in tanner's life, we saw positive results from something!  At the beginning, Tanner's seizures had significantly decreased during the daytime.  He was still having a lot of seizures at night though and seizing all night long, waking up a few times at least.  BUT, it was a little progress.  He started to come to life, seeming more aware, active, alert and talkative again.  That only lasted a few weeks and in typical Tanner fashion, all hell broke loose again.  As of today, I'm happy to report that his cluster seizures (spasms/myoclonics) are gone!  so the medicine HAS helped.  but he has started to confuse nighttime and daytime.  he has awful tonic seizures now during the day and passes out, only to wake up around 1-2am and is then awake.  His molars could be coming in and causing additional seizures, but we aren't sure because he can't express when he's in pain to us.  he doesn't cry, he doesn't talk, he can't use his hands to even point to what hurts.  welcome to the world of a special needs family!  We got a new nighttime medicine approved for Tanner that we have been trying to get him on for awhile, so we will start that this Friday, and hope it solves some of this. We had such success when Tanner was on a lower dose of the new medicine, so the next step will be to lower the dose and see if that helps.  Like I said, clusters are gone but come spend a full day in our household and try to imagine 3 years of watching your kid seize almost all day long, with rough, hard to watch tonic and tonic clonic seizures, trying 15-20 different AED's and steroids, 3-4 different CBD and THC oils, a very strict diet, a total holistic approach and a VNS surgery, and STILL having to watch him seize so bad his little body literally just passes out.  You'd feel defeated too.  Seizures are part of his disorder...the worst part.  They will more than likely never go away, but what I wouldn't give to see the day where he is able to live a consistent life of only 1-2 seizures a day at most.  To have any sort of seizure control.  These seizures have left us feeling completely defeated.  Yet we go on.

Terrified...(yet slightly excited).  Tuesday, March 7, Tanner will begin school! He will start off with only going 1 day a week for 3 hours a day and we will work up to 2 and then 3 days a week, but 1 is all momma can currently handle.  The school seems great and the teachers all very nice!   He will be in the severe and profound classroom, so not just special needs pre-k but better, one on one attention.  After multiple meetings, I actually feel more comfortable than I thought I would, but for the past 2 years, Tanner has been home every day.  Brian and I work from home when we are in town so we get to see him all day!  If he has a bad day, we are there to help.  If he has a good day, we are there to witness it.  If WE have a bad day, we get to see his sweet face and kiss him and feel better.  He's now going to be in the custody of (at this point), complete  strangers.  He will not come home each Tuesday and tell me about his day.  He will not tell me how much he loves his school friends and teachers.  He will not tell me if he enjoyed playtime or therapy time.  and most importantly, he will not tell me if he was mistreated. 
When Tanner was first in the hospital at 3 months old, the doctors ran a ton of tests.  blood work, MRI, EEG and spinal tap.  they needed to put him under anesthesia for the MRI but planned on doing the spinal tap the morning following, with NO anesthesia.  can you imagine how painful that would be!  A spinal tap to an infant, with no warning and no anesthesia!  I said, "over my dead body"!  I argued and fought and convinced the 2 departments to work together and schedule both procedures while under anesthesia, one immediately following the other.  I spoke up for my kid and protected him because that's what a mom/parent does.  But how can I protect my child when I don't know if there's anything to protect him from? Tanner still feels.  he still knows when he's loved and when he isn't. He still knows when someone cares about him and when someone is neglecting him.  He still feels pain.  How will I know.  How will I know anything.  Terrified is the only word I can think of, but it doesn't do justice to what I actually feel.  I will shed a LOT of tears on Tuesday, happy for my baby boy to be growing up and experiencing new things.  Happy that he will be in a classroom with peers and make friends.  Happy for him to get to meet new therapists who will help him.  But sad to let go, even if only for 3 hours.  Sad to lose a little bit of control and not know how he spends every second of his day.  So friends and family who are reading this, here's what I need:
prayers that Tanner's seizures begin to improve with these 2 new medicines. Prayers that Tanner gets back to restful and peaceful night sleeps. Prayers that he has a fun and enjoyable first day of school and every day of school following. Prayers that he is treated with love and compassion and patience. and Prayers that momma survives Tuesday! ;)

When Tanner had his 1st birthday, we had been thru such a roller coaster that first year that everything was a blur.  I was so excited to celebrate with him, but when the day came, I was consumed with how will he eat cake, he can't even hold his head up in his high chair and he was still crying all the time. I didn't know how to deal with the situation as it was so new to me. Since then, a lot has changed but a lot has emotionally stayed the same. Brian and I talk often about needing a new chair to feed him in as he gets bigger, turning our van into a wheelchair accessible van, having a ramp to get into our home, putting in some sort of elevator or lift, installing a lift from Tanner's bath into his bedroom, and how we will be able to afford all of this. But out of sight out of mind right? I can still carry Tanner now so let's not think about it yet. He's still in a stroller, so let's not think about it yet. Then his Occupational Therapist tells me to look into an organization that remodels rooms in your home and they are looking for families for 2017, so we should apply. I mentioned that we don't need a lift or anything yet. I'm still holding out hope that Tanner will walk one day.  She looked at me and said, "Courtney, you need to look into it!" It was my first kind of "real" moment that Tanner is not 1 year old anymore.  He's about to be 3, he weighs 38 pounds, he's 3'3" tall and he's nowhere near walking.  This was what I needed to hear, but it was not a fun moment.  I filled out the paperwork and dropped a form off for his doctor to fill out and when I picked it up...another "real" moment.  The form asked for age of child and developmental age of the child.  She wrote "4-6 month old infant" as developmental age. This sent me into instant tears. I describe Tanner to others all the time as an infant in a toddler body, but to have someone else say it and agree with you was heartbreaking and very real. To see the words "infant" written about my boy who's about to be 3 was very hard, but that's reality.  I never realized that when I talk about Tanner, I'm in a state of raising awareness, of teaching others or defending him.  I'm not in a vulnerable state of mind. 
In the efforts of moving forward, we are waiting to hopefully be approved for some sort of home makeover to better suit Tanner's needs and we have scheduled him for VNS surgery, November 8th.  We have tried a ton of medications, including many different CBD oils.  The CBD does amazing things to his personality and happiness, but nothing has touched his seizures.  And they have been really bad and out of control for awhile now.  VNS (Vagus Nerve Stimulation)  is designed to prevent seizures by sending mild pulses of electrical energy to the brain, via the vagus nerve. A device, similar to a pacemaker, is installed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.  Like anything else with CDKL5 kids, this surgery works for some and does not work for others. At this point, we have to keep moving forward and trying everything we can. So as difficult as it was, during Tanners first year of life, for us to mourn the loss of the child we thought we were having, I find that I am still doing that today. Please keep Tanner in your thoughts and prayers as he goes into surgery on the 8th, because above all else, I'll happily keep my "infant" baby boy, in any size and age body, as long as he's here on earth with me.

9 different seizure medicines, a very strict ketogenic diet, 3 CBD oils, a complete holistic supplement path, 2 steroids, 2 spinal taps, 2 MRI’s, 2 sedations, more EEG’s than I can count, probably a million needle pricks and pints of blood.  A diagnosis of epilepsy.  A diagnosis of CDKL5. A diagnosis of Infantile Spasms, and now, potentially, lennox gastaut syndrome.  Both extremely bad and detrimental to the development of a child.  To the development of Tanner.  1 ambulance ride, 2 rescue meds which have now been given multiple times, a central line drilled into the shin bone of a 9 month old.  A swallow study showing aspiration, meaning liquid is being swallowed incorrectly and going into his lungs, which if not corrected, could cause pneumonia, organ failure and worst case scenario, lead to death.  8 different types of seizures, currently still having at least 4 of those today. And a potential surgery called VNS that we are looking into getting in the very near future.
Tanner has been thru more in his lifetime than the majority of us in this room will ever go thru, and he’s only 2 ½ years old.  Do any of you know exactly how many smiles you’ve seen your child give?  I bet not because they come so frequently, thank god.  I bet Brian and I could sit down and count the amount of real smiles we’ve seen from Tanner.  When Tanner smiles, we stop what we are doing and we smile back.  We run into the room and we celebrate that smile!  CDKL5 is terrible, but those smiles, as few and far between as they are, they are what give us hope.
Hope, hope is challenging at times but without it, what is even the reason to live.  So hope we have! Love, Love is very easy for us to give.  It comes naturally and in abundance. Cure, cure is why we are all here tonight.  Do you ever think back to the very first person who was diagnosed with Cancer.  Maybe the very first person had lung cancer.  And the next week someone else was diagnosed with liver cancer. The week after that, brain cancer.  How on earth will they find a cure for Cancer when there’s so many different kinds, that are affecting people so differently? I pray to god that a cure is found one day, but do you know how much money the Cancer society raises today?  They raise more money in 1 day than the IFCR raises in a whole year.  Remember the starfish story I told at the balloon lift off.  That’s not just a story, it’s the truth.  A boy, walking along the beach sees hundreds of starfish that are getting washed up on shore and dying.  The boy starts picking them up and throwing them back into the ocean. A man comes up to him and says, young man, what are you doing? You can’t possibly save them all.  It’s hopeless.  You can’t make a difference.  The boy picks up another starfish and throws it into the ocean and says, “I made a difference to that one”. Our Tanner is that one and he needs your help.
While at the CDKL5 convention, we got more clarity on Tanner’s specific genetic mutation.  We found out, without making this too difficult to understand, that Tanner does not have a deletion of the CDKL5 gene.  IN fact, his gene or protein is all there.  but there’s 1 amino acid, on exon 6 of the entire protein that is replaced with a different amino acid. 1 amino acid change, amongst billions, is causing ALL of this!  we found this fascinating and unbelievable at the same time.  Imagine all 1500 cdkl5 kids having a different genetic report because each person had a different amino acid change or it was occurring on a different exon.  There’s no way to test a medicine or find a cure for everyone if each person is affected so differently.  Or is there?  The work the foundation is doing is truly amazing!  They are on the cutting edge of new medicines and surgeries that could help Tanner!  There’s currently 3 centers of excellence for CDKL5 and Rett, meaning hospitals that focus specifically on CDKL5, where doctors see CDKL5 patients around the world and spend their time focusing their efforts on kids like Tanner.  The foundation is investing time and money into potentially opening up Emory as the 4th center of excellence.  Do you know how amazing that would be for us?  How amazing that would be for Landon’s parents, who are here again this year!  Those are just a couple of examples of where your money is going. 
We wanted you to feel confident that your money is being well spent on things that could potentially save Tanner’s life. 
Harper Howard, Sorrel Jay Bratton, Paige burns, Dani Smith.  Those are names of CDKL5 children who have gained their wings in heaven just this year, that we know of.  We don’t know what tomorrow may hold for Tanner.  I don’t think we were hand picked to be Tanner’s parents, I don’t think we are any more special than any of you and I don’t think we are any stronger than any of you would be if your child were also in pain and needed your help, but I know for certain that we cannot do this alone and thank god we’ve never had to.
Words will never be able to express how much love and appreciation and thanks we truly feel for all of you.  We met other parents at the convention who said how jealous they are at the amount of support we have.  We truly could not survive without the friendships we have made and love we receive from all of you.  I never thought I’d be thankful that Brian and I both have parents who are divorced, but they are all happily re-married, so for our family, that means 4 full sets of grandparents who love the heck out of their grandchildren.  Thank you for supporting us and loving our baby boy so much. I’ve heard from a few people that they can tell how much tanner really reacts to me or to Brian or to Carson.  That you can tell he recognizes us and loves us.  We see that too, but something that brings us so much joy is when we can really see when tanner is happy.  Tanner has 4 different therapists that each work with him on a weekly basis and he loves them all, but his favorite therapist, by far, is here tonight, his speech therapist Jill.  His Occupational therapist was at the balloon lift off and the company they and his physical therapist work for is one of our sponsors, noted in the programs.  I want to specifically thank my cousin Sarah for flying in with her boyfriend Grant from Chicago to be here tonight.  To one of my best friends Miranda for coming in from NY, and my awesome friend Tina, who’s husband Josh is our chef tonight and donated all the food for free, so more of your money could go straight to charity.  Brian and I want to again thank Heather for organizing this event with us and of course to big brother Carson, who on a daily basis, teaches us love, kindness and forgiveness, just by being himself.    
I’ve prepared a little slideshow and when it’s over, please eat!  And don’t forget the items you see out and on tables are part of our auction and we will close them out tonight!  But don’t forget our online auction too, which is still live and doesn’t end til the 31st!  www.biddingforgood.com/toastingtanner

Have you ever wondered what it looks like to watch a child seize?  Do you know that there are a ton of different types of seizures out there and they all look different? Those of you who know us or know Tanner but have never seen him have a seizure, have you ever wondered what it would be like to watch it happen throughout the day?  and how often in a day? Are these even things you could realistically picture? What if it were your child? I have posted short videos below.  Each video shows Tanner having a seizure.  ALL DIFFERENT KINDS!  Tanner has had, in his short 2 years of life, all of the following seizures: Myoclonics, spasms, cluster of spasms, clonic, tonic, partial, tonic clonic, absent and even what we call "seizure smiles". Watch the videos below and imagine it was your child.  What would you do to help? None of us can control these or wave a magic wand to make them go away. Brian and I are doing everything in our power to make the right choices to help Tanner, but that's not enough.  What if I told you there was a medicine out there that has been proven, in mouse models, to restore memory performance.  Another words, gave tanner the ability to roll again since he has regressed and forgotten how. What if it proved to have long term impact on neurological survival and cognitive function? What if Tanner was able to take a medicine that helped him develop!  Would you help us get that medicine?  If your child were the ones in the video, does this sound like something you'd work hard at getting? That is 1 example of what the money donated to the IFCR (International Foundation for CDKL5 Research) is going towards.  YOU CAN HELP!  Come to our event Toasting Tanner on August 27th and celebrate the fact that these CDKL5 children are gifts from God. They are more special than we are. Tanner is still here and thriving and as happy as he can be and we want to celebrate him!  Donate, using this link www.TannersJourney.com/events  and your money WILL HELP! I can't continue to watch Tanner have these types of seizures and more, EVERY, SINGLE, DAY.  Help us and give back to a worthy cause that doesn't get the recognition it needs, like other diseases and disorders do.  Do not forget about the rare. Do not forget about the unique. Do not forget about Tanner.
https://youtu.be/kO-8Qa1Np6c
https://youtu.be/t0rWdIqSNxQ
https://youtu.be/dkap95Y9jqs
https://youtu.be/uc0KU8rH2Uw

Last month, Brian and I flew to Chicago and attended the CDKL5 and Rett Syndrome convention.  It is held every 2 years and this year, it also included MECP2 and FOXG1, which are also rare genetic mutations.  We really didn't know what to expect, so going there, all we were really excited for was to meet, face-to-face, other families who we were already calling our friends, yet we had only met them virtually. We joined an online support group for other CDKL5 families when we received Tanner's diagnosis and so much of what we learn is from them and not doctors! Meeting these parents and some children in person was so wonderful that words can't express how we truly felt spending an entire weekend with people who just "got it".  We could talk about Tanner and not have to explain what he has.  As much as we enjoy spreading awareness, it was just nice to get a break.  So from that standpoint, the weekend was amazing, but it ended up being so much more.  We learned things from doctors and specialists and the IFCR board members that will help us in our current and future care for Tanner.  Some things we learned:
1. He should be getting yearly EKG's
2. He should be getting a yearly clinical spine evaluation - Tanner's physical therapist says he looks like he's getting scoliosis, which is common for CDKL5 kids.  Not great news and not much we can do about it but make sure he's in good positions as often as we can. His low tone (lack of muscle) is what is causing this.
3. He should be getting 24-hr EEG's and sleep studies every 6 months.
The above 3 things are 3 of 8 things they said is critical in standards of care for a CDKL5 kid.  This is excellent fuel we will need to go to our local neurologist and communicate our NEEDS.
We learned that some of the AMAZING work the foundation is doing includes giving a mouse model an inhibitor that restored memory performance. The mouse showed long term impact on neurological survival, maturation and cognitive function...even after meds were taken away.  Read this paragraph again and try to understand just how amazing this could be for our CDKL5 kids!  Development!
We learned that flying to one of the 3 CDKL5 "Centers of Excellence" is a great way to help the foundation out with research, especially since CDKL5 is more rare in male's and we have one.
We learned that Tanner's specific genetic report showed that his mutation is on exon 6 of the CDKL5 protein.  Basically, Tanner has the entire protein he needs. Exons 1-5 are functioning just fine.  Exon 7 and beyond are functioning just fine. But just on exon 6 of the protein, he has an amino acid change.  He should have "Cysteine" and instead, he has "Phenylalanine".  That 1 amino acid change is what is causing ALL of this for Tanner.  This was new information for us and effected us greatly.  How could such a small thing effect SO much?  But it does.
We listened to mom of Harper Howard, a CDKL5 angel in heaven, talk about the day her little girl lost her battle and the decision they made to donate her brain to science.  This is not something I will write about or explain because it's not my story to tell, but as hard as it is to imagine, Bio banking is something Brian and I need to discuss, "just in case".  My dad has had many conversations with me about everything he has planned out in preparation for the day he passes, as I'm sure a lot of parents in their 70's and beyond have done.  They do not want their children to have to figure it out while dealing with the loss of a parent. As hard as it is to discuss those details with my dad, I think it is somewhat "normal".  Have you ever planned for the death of your child?  Is that too harsh of a question for you to read and think about?  I'm sure it is. Now you're on your way to thinking like a parent of a CDKL5 child.  It is not fun, it is not easy, we remain positive, yet we also need to consider the "what if".
Over the past few months, Tanner's seizures have changed.  He is still having clusters of spasms, yet not nearly as many as in the past.  But he is now also having Tonics, Clonics and an occasional Tonic Clonic (grand mal).  That's 3 additional types of seizures!  Due to the change we made of his oil, his personality is back and he has so much life back in him, which is great, but the seizures are affecting everything!  he can no longer roll.  his body is getting very tight, making movements harder.  His head control is not getting better, all-though he seems to be doing great with this recently!  The Tonic seizures cause Tanner to throw up and not knowing what specifically was happening, we made him an appointment for another swallow study. At the convention, we learned what the signs are for aspiration, yet Tanner wasn't doing any of those things!  Unfortunately, the results came back that he is  aspirating.  The reason there are no signs is because he's a silent aspirator, making it that much harder to detect. He only aspirates liquids, not food, so we now buy stuff to thicken all his liquids and we pray it will work.  If not, maybe he will need some sort of feeding tube but we will deal with that when and if it comes.  Until then, we will continue to deal with the punches. Sometimes it feels like we take 1 step forward and 2 steps back. But we took 1 step forward right?  Our son now appears to be happy!  He has smiled more in the past 2 weeks than he has in his whole life.  He kicks and swims in the water and "talks" up a storm.  So we will do what we've always done, celebrate the inch stones, fight for a cure, lean on each other and go on with life, because we love our Tanner! Please buy a ticket to our fundraiser, Toasting Tanner.  Your donation WILL make a difference, you will learn more about Tanner and his CDKL5 brothers and sisters and we will have a great time partying together because fighting for a cause is a positive and happy thing to celebrate!  Go to the "Events" page on this website to donate or purchase your ticket today!

Being a mom to a special needs child has more ups and downs than you could ever imagine. As if it weren't upsetting enough that Tanner has been seizing, uncontrollable, every day for almost 2 years now, his EEG a few weeks ago showed that the type of seizure he's having are spasms and the brain activity is hypsarythmia.  Hyps is what he had over a year ago and is very common in CDKL5 kids, but it is very destructive.  It creates permanent and irreversible developmental damage.  Most children are put on steroids to try and knock it out as quickly as possible, and then put on an anti-seizure med to try and keep the Hyps away.  We did this and the steroid did work, but there's always a possibility it will come back and it did in Tanner.  When I received this news, I took a day or two to cry it out and was extremely depressed and saddened at what the future may now hold for my sweet boy.  I will never give up fighting for him but sometimes you just feel completely helpless and for a split second...hopeless. As a mom, that feeling is one of the worst you could feel.
I turned to the CDKL5 support group we are a part of on facebook and expressed my feelings. I was partially venting and partially asking for any and all help/advise on where to go from here.  What I got in return were phone calls, emails and responses in not just support from people who really did understand me, but HOPE.  I heard real life stories from parents stating their child is older than mine and HAS progressed and also still has spasms and hyps.  No matter how small the progression was, progress is progress!
 We still have options.  We have a lot of options actually! So once again, with thanks to my CDKL5 family, hope prevailed.  I guess I'm allowed to ride on the roller coaster of life, thru this journey, because I can't control it sometimes, but something truly amazing happened this weekend. I found my hope.  Brian and I discussed our options, we made some medicinal changes and just like that, a glimpse of our happy boy appeared.  It's so hard to answer the question of "How is Tanner doing".  I wouldn't say that he's any better or any worse than he has been over the past month, but you can't tell me that progression is not possible when this kid who used to roll all over the place, suddenly came to a stop due to the amount of seizures, but has been picking it back up, just like that.  He "speaks" to the sun every time he sees it. And he's been "talking" to us so much that his throat has got to hurt! We walked in our upsee and tonight he spent at least 20 minutes rolling back and forth and back and forth, like in the video below. We love our baby boy so much and will NEVER give up hope.  Where there's hope, there IS a cure.

For those that are familiar with the upsee, we realized Tanner's foot was coming out of the shoe and fixed it :)

It's been awhile since I have updated everyone on Tanner and a lot has changed, but things seem to change with him day to day! In November of 2015, Tanner began taking a CBD oil called Epidiolex. This oil was given to us via a trial being run by the FDA. I'm not 100% educated on all there is to know about CBD oils, but I know enough now to share with you that there are many different kinds. With Tanner, we cannot assume anything is for sure going to work, because with his disorder, each child is different and effected by medications so differently. I was told there were many cases of kids who did not improve while on Epidiolex, but a few who did, and a few was all I needed! Epidiolex is the CBD oil the FDA is trying to legalize and probably the only oil it will ever considering legalizing (unfortunately), because it has no THC in it. THC is also part of the plant and in a lot of seizure patients, the entire plant is needed in order to help! Nonetheless, we had to give it a try. For the first couple of months, we saw no change at all. We were then given the approval to start lowering some of his Pharm. meds, and when we did that, we noticed mild improvements to Tanner's personality and seizures. We were only halfway to max dose, but the trial stated we had to wait another 2 months minimum before we could increase him again. Since we weren't seeing any significant improvements, this was somewhat unacceptable. Tanner was having around 350 spasms a day at this point and an occasional partial seizure too. You can understand that waiting and watching this for another 2 months was simply too hard to bare. So the doctor agreed to let us lower his other Pharm. med. At that time, Tanner began having significant increased seizures. Partials, tonic clonics and anywhere from 650 to 850 spasms A DAY! a couple days his count was over 1000! Tanner was no longer rolling. He was no longer talking/babbling, like he used to do all the time. He was limp and seemed very unhappy. The amount of seizures he was having was taking him away from us. We gave him the Pharm. Med back, but clearly the oil was doing no good for it to be this bad, so we began to wean the oil.
On March 10th, we began giving him a new oil called Palmetto Harmony. It does have THC in it, but only .3% which is considered legal in all 50 states. We will be on our own in terms of researching and purchasing CBD oil now, but luckily, we have the support of Tanner's neurologist to still monitor him and check blood levels. One of the medicines Tanner is on has very serious side effects of liver failure, and both medicines he's on are proven to react poorly with CBD oil. Tanner's levels have never been abnormal, but it's extremely important to keep it monitored. Since giving Tanner the new oil, we have again seen mild improvements, but feel like we are back at baseline now and definitely have our fun-loving, happy boy back! He is back to having 250-350 spasms a day, which is NOT good and we pray that the longer he's on this oil, the better it will get. But 350 is better than 850! He has started to gradually roll again, on his own and I have not seen the other seizure types he was having before, but in typical Tanner fashion, he tends to show improvements for a few days and then goes back. I'm not trying to be negative and in fact, we remain extremely positive and hopeful, but I know it can be confusing in trying to learn about Tanner's disability and how it is for him day to day and understand that for him, nothing is guaranteed. He has been seizing now for 19 months...every day...NO breaks. A lot of parents talk about their children having a honeymoon phase from seizures. Our CDKL5 kids will more than likely never be seizure free, but they can be minimal and controlled and if they are seizure free, we call it a honeymoon phase, until they come back. The honeymoon phase could last days, weeks, months or even years. But Tanner has yet to have one. As I type this blog right now, his nanny is texting me that he's upstairs having one of his other seizure types, for the first time since starting the new oil. Again, nothing is guaranteed.
I will conclude with this...Tanner's only been on the new oil for 7 days. Please pray with us that things continue to improve with his seizures as more time goes on, but watch the video below and smile because at least or boy appears to be happy again, which may be all we can ask for.

Every mom worries about their children and whether they are making the right decisions, when it comes to just about everything! When I was pregnant with Tanner, I remember interviewing daycare centers with Brian and finding 2 that we liked, but 1 a little bit more. As we left to go home, I sat in the car and cried. Nothing bad had happened and both schools would have been excellent choices. But what if 1 of the teachers at the school we chose didn't like Tanner? What if he wasn't happy? What if it wasn't as clean as we thought it was? What if we make the wrong choice? If you are not a parent, this may seem very silly to you, but to me, I was about to drop my baby off in the arms of total strangers, having no idea if he would cry a lot or be happy or anything, because he's a baby who can't talk and tell me anything. I'm guessing a similar feeling came over most moms. Now imagine your newborn is now 2 years old and special needs, still non-verbal, and probably always will be. When he cries, is he in pain, does his stomach hurt, is he constipated, is he about to seize, does his head hurt, is he hungry, is he tired, did i accidentally pinch him when picking him up, does something itch....  He can't use his hands to point and completely non-verbal!  Is this cry CDKL5 related or typical baby related? Am i thinking of every possibility?
Over the past 2 weeks, we have increased Tanner's dose of CBD oil and decreased one of his pharmaceutical medicines by 2 doses.  Since doing that, he has not had any tonic clonics, is smiling periodically and seems to have a little personality coming out.  All of that sounds like amazing news to me and that we are headed in the right direction!  BUT, he is still having clusters of spasms, in very high numbers and they seem to be a bit more severe than before, which makes me think Infantile Spasms, vs. just myoclonic jerks.  (The cluster he just had today was his highest. 201 jerks/spasms/seizures, in just 1 cluster). We chose Depakote as the medicine to put him on months ago because he was having spasms, and all other medicines had not worked. This was the next best one.  His eyes continue to dart back and forth, very quickly, but less frequently than before.  I thought these were seizures before but now am wondering if it's Nystagmus. How do I know? Are the spasms getting worse because we are weaning? Is the smiling and personality getting better because we are weaning? Are the Tonic Clonics gone because we are weaning or because the oil is working? Am I making the wrong decision in weaning his medicines? Or is all of this just a coincidence? These are the questions that run thru my head every second of every day.  I'm not writing this blog because I'm expecting people to comment with "you are doing a great job", "you are a great mom". I appreciate ALL of those comments, but the truth of the matter is that I'm doing the best I can. so If you are wondering if the oil is working, the answer is, I have no idea. Brian and I will make the best decisions we know how to make for Tanner today, and we may change our minds for tomorrow. 
As we enter into 2016, we all have goals and hopes and dreams that we want and wish to accomplish right? I hope I surpass my budget at work so I can keep my job. I hope and will continue to try and lose weight.  I will always hope and pray and strive to find a cure for CDKL5.  But right now, day to day, thinking realistically, all I pray for is that Tanner is able to smile more, smile bigger, smile longer. That he continues to be able to show us more and more of his personality, but most of all, that he is able to live day to day with NO or very FEW seizures.  I will leave you with a VERY positive note: Tanner had some amazing therapy sessions this week and for the first time ever, he was able to almost completely support himself in a crawling position. I still can't tell you if any of the decisions we are making are impacting his abilities, but he IS getting stronger and I am certain he is a happy and VERY loved boy. HOPE.LOVE.CURE. Happy New Year to All!